Conference a reprieve to parents of children with autism

COSTA MESA – Over 300 parents of children with autism coalesced in Costa Mesa over the weekend for tips, resources and much-needed time away from their roles as caretakers for kids all across the disorder's spectrum.

The "Real Help Now" conference was held by the Irvine organization Talk About Curing Autism, which connects leading autism researchers and doctors with parents looking for support, both emotional and medical.

The conference gave families from all over the west coast a chance to meet others going through the same struggles as they raise children with the developmental disorder which affects communication and social interaction.

"Put on some lipstick, have some wine and just be a normal person for once in your lives," the organization's founder Lisa Ackerman told a group of mothers at the conference, though about as many fathers also attended.

Ackerman said the community of "autism moms and dads," as she calls it, has become increasingly tight-knit over the past 15 years. What started out as a support group of 10 families in her Newport Beach living room 13 years ago has now turned into 31,000 families across the country and 4,000 families in Orange County alone.

"Welcome to the club you never wanted to join," Ackerman said. "But if you get connected, better things will happen."

Friday's workshop included a discussion with expert Kristin Selby Gonzalez on the challenges of raising a child with autism and what she wished she knew from the beginning of her son's diagnosis. Some of those challenges were medical, but most were personal.

"I felt guilty if I did anything not related to autism," Gonzalez said.

The mother of an 11-year-old boy with autism opened up to the crowd of young parents about her divorce, financial struggles and declining self-image as she poured through books about the disorder and experimented with different diets and treatment plans for her son. She said if she had to do it differently, she would have taken better care of herself.

The advice was familiar to parents Moira and Michael Giammatteo, whose son was diagnosed with autism in 1999. They first attended a mourning group, which focused on the grief associated with finding out their child had the disorder.

"We would walk out of every meeting crying," Michael said. "But we wanted answers, we wanted solutions. We didn't want to cry any more."

Among Saturday's lectures was Jessica Postil, a behaviorist and founder of Autism Spectrum Consultants, Inc. She unveiled the results of a study at the conference, which looked at how iPad apps coupled with therapy help children with autism learn to communicate.

Kids in the test groups used apps like Proloquo2Go and Stories2Learn to tell their parents when they observe occurrences. For instance, if a helicopter flew by, a child with autism may not be able to express what he or she observed. With the app, the child can use symbols on the iPad for help understanding and pronouncing the word "helicopter" and using it in a sentence.

When coupled with applied behavior analysis therapy, kids were able to expand their vocabulary and communicate better with their parents, teachers and peers, according to the study. The findings will go a long way in improving the speech and behavior of kids with limited vocabulary, Postil said.

"One of the standards to be in the study was that they had to have less than 10 words in their vocabulary," Postil said, "So you can imagine going from that and then speaking in sentences -- That's a big jump."

Postil's research group also stumbled on some unexpected findings while working with iPads. The robotic voices used in the apps appeared to help kids articulate words better.

"When you have teachers, adults, or other professionals working with kids, they have different voices and different tones and even the way they say words," Postil said. "Hearing the words and the sentences in the same tone and voice was easier for the kids to learn how to say these words."

Learning about success stories like this was key to the conference's mission, Ackerman said.

"It shows these parents that when they find out their child has autism, it's not 'game over.' It's 'game on.'"